Published in the October 4, 2018 edition

By MAUREEN DOHERTY

NORTH READING — Before sitting down to read this story, do something that most of us take for granted every minute of every day — stand up and take a few deep breaths. Feel the air as it travels through your nose, expands your lungs with life-giving oxygen and expel the air through your mouth.

Better yet, go outside and take a brisk walk around your neighborhood, taking note of your ability to simply breathe and be energized by physical activity. Then come back and be inspired by this story.

—————

By all accounts, Andrea Gavin Becker shouldn’t be here. A 1988 graduate of North Reading High School, she was born with cystic fibrosis at a time when most youngsters with CF did not live past their teen years or into their 20s.

But she has done more than just defy the odds. She has been able to live her life to its fullest for decades, thanks to the double lung transplant she underwent 20 years ago. A self-described art director, creative director, painter, illustrator, toy coloring artist and novice carpenter, since 2005 she has worked as a freelance creative director at Art + Design. Previously, she worked at “storied agencies,” both large and small, from San Francisco to Boston, and won awards for her work.

ANDREA GAVIN BECKER and her husband, Stefan Becker, enjoyed a visit to Italy last year. (Courtesy Photo)

Although she and her husband Stefan enjoy traveling both here and abroad, to celebrate her 20-year milestone the couple simply went for a walk in the woods with their two rescue dogs, Zoey and Kaia, near their home in West Roxbury, savoring their ability to do so while also saving up their energy for the huge celebratory party they will host on Saturday night.

She is calling it “Andrea’s 20-year Lungaversary — A Celebration of Life, Love and Lungs,” and it is being held at the Boylston Schul-Verein (BSV) German-American Cultural Club in Walpole. It will be attended by about 200 family members and friends, as well as many members of the medical support team she relies upon to keep her healthy. There will be food, music, dancing, and a slide show of her 20 happy post-transplant years. She notes that since she met her husband after her transplant, he never knew her with CF. The party will bring together those who have known her at all stages of her life.

Among those involved in her medical care who will be attending the party are her transplant surgeon, Dr. John Wain, formerly of MGH; Dr. Rebecca Kolp, one of her physicians at MGH; Nina DalPozzal, a nurse at MGH; and three PTs: Laura Driscoll, Paul Wilson and Deb Povinelli.

Andrea credits her parents, Joe and Brenda Gavin, with enabling her to have a childhood in which she was “blissfully unaware of the implications” of CF.

Her family lived by the motto: “Let’s tackle this day, this day,” she said. “It never occurred to me to ask if I was going to die or even if my brother was going to die. Everyone always acted like we weren’t,” she recalled. She and her older brother Joe both had cystic fibrosis, and their younger sister, Erica, fortunately, did not.

Joe underwent a double lung transplant in 1991 at Mass. General Hospital, but sadly, he passed away from post-surgical complications.

“This is important. My brother was the third transplant at Mass. General. Dr. (John) Wain did it and that is amazing. Joe developed aspergillosis post-transplant — it is a mold infection and back then they didn’t know about it or know that immune-compromised people were going to get it. He eventually died from complications and after him, I believe, they started treating patients prophylactically with anti-mold, anti-fungal meds. I was actually treated prophylactically before my transplant because of my brother, so I believe in many ways he saved my life,” she said.

The Joe Gavin Keep the Faith Scholarship was set up in his memory and has been given to graduates of NRHS who have overcome the odds to thrive in their own lives.

A lot of advances were made in the world of transplant surgery in the seven years between Joe’s and Andrea’s surgeries.

She was the first living donor transplant to receive a portion of a lung from a non-relative. One lobe was donated by her uncle, Ken Gavin – her father’s brother, but the other lobe was donated by a non-relative – her father’s co-worker, John Gensure. This was an incredible gift of life to her and her family as the surgery carried a huge risk for him but he was still willing to go through it, she said.

Andrea recalled that John volunteered to put himself on the transplant list at MGH because her father had already lost his son to CF and he didn’t want him to lose his daughter to this disease. Gensure passed away last year.

Another difference between her surgery and her brother’s was it was planned in advance, so although once it was deemed medically necessary, as her health had begun to decline, she had not declined to the extent that Joe had prior to his surgery.

“I didn’t have a typical run up to transplant because I had a living donor transplant and it was scheduled, so I never went through waiting for the call and very scary deterioration,” she said. “I definitely deteriorated very quickly because my lung collapsed on a plane, I got stranded in Detroit at a hospital for three weeks, I got Medflighted back (to Boston) and that is when everything was kicking into high gear. They knew I could not make it on the waiting list because back then it was two years to wait.”

At one point she had to be put into a medically-induced coma, after which it was a struggle to take a few steps a day and it took a week before she could walk across a room.

“I was very, very sick that summer but by the time I went home from that whole event it was three or four weeks to my scheduled transplant. And while on oxygen I could barely come down the stairs and I remember thinking ‘this is no way to live.’ I was so ready. So I went into the transplant with a lot of positive visualization, and I had to work really hard at it because my brother had passed away from the same surgery with the same (transplant) team, the same surgeon.”

“So after I woke up and I got through the recovery I don’t think I even thought to ask if my lungs would have CF in them,” she said, recalling that it was “mind-blowing” to realize that her lungs would not have CF.

Due to the nature of CF it continues to affect other organs and her digestion but not to the degree it had when she was a child and young adult.

While her rehabilitation period took a long to return to her level of fitness from the previous year, she recalled “what was amazing to me was I wasn’t coughing anymore. That in and of itself, just not coughing up green gunk. If you’ve ever had to go someplace quiet and try to suppress your cough… It was so quiet in my head.”

“You are coughing up green gunk because you have an infection and fevers, and you don’t feel very good. At that point in your life even if you’re walking around and people say hey you look pretty good considering …you think, ‘well I am glad I am doing a really good job coping.’ You have a lung infection all the time and are running out of options to treat it because you have antibiotic resistance.”

When a person has lived through such life challenges it really changes one’s outlook on not sweating the small stuff and brings into perspective the reasoning behind the motto her parents instilled in their children to tackle each day as it comes.

Andrea remains a pioneer in the medical field given her longevity post-transplant. When she underwent her surgery it was uncharted territory so buying a patient a few more years of life was considered success. She has since met a few people who have lived with their transplanted organs for even longer than 20 years. One woman who had known her brother from the CF clinic underwent her lung transplant 27 years ago. As a member of support groups on Facebook she finds it satisfying to be able to offer other people facing transplant surgery the hope that they will enjoy 20 or 30 or more years of life. 

On the horizon Andrea will be considering her options for undergoing a second double lung transplant. In a few weeks she and Stefan will travel to the Cleveland Clinic for an extensive evaluation. While there, she was invited to stay at the home of a childhood classmate, Carol O’Neill Scheuer. They were both in the NRHS color guard together. Color guard was the one physical activity that she could do with her classmates as a child and she has many happy memories of performing the routines and winning awards at the competitions as a member of the Marching Hornets in the mid-1980s.

“I would say this year I’ve had rough year. I had a flu and I had para-influenza,” she said, which can take a toll on the immune-suppressed population. “I have lost some lung function and am just starting to remember what it is like to get a little short of breath when doing laundry or going up and down the stairs. I am still able to do it. I don’t have a cough but I have occasional shortness of breath, so we are getting our ducks in a row to see if we can do it over again,” she said.

Getting this evaluation will provide Andrea with the peace of mind that comes from knowing options are available before a medical crisis occurs so she can continue with the joy of living.